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Thursday, 18 September 2014: One Year, One Hundred and Seventy Days Old

It’s been a nervous wait the past few days, wondering what today would hold.

I didn’t have high hopes for an answer to Ayla’s problems, but I was dreading an complete absence of possible next steps that would leave me back at square one with only google and peopel’s theories to get me by.

But, the doctor was wonderful, again. Clear, precise, caring and to the point. Here’s what he said;

RE: Failure to Thrive

The procedure on Friday proved that Ayla’s Failure to Thrive is NOT a result of digestive issues, although he definitely concedes there is something wrong with her growth (Ayla’s only grown two centimetres in the last 9 months and she weighs even less now than she did back then. FYI – she’s now 17.5 months old). According to the doctor Ayla’s digestive system is working correctly and shows no sign of damage, meaning that her Failure To Thrive is not due to an inabilty to absorb nutrients from food. This supports his comments around Ayla not actually looking like she’s malnourished; Ayla is perfectly proportioned, just miniature in size and not growing. These findings have also confirmed that the Paediatric Endocrinologist we’re booked in to see in mid-October is the best next step for us because apparently she will be able to conduct tests that look specifically at Ayla’s size and growth as a primary concern.

RE: Lack of Appetite

The procedure on Friday did show some irritiation to Ayla’s upper digestive system, suggesting that she may be suffering a small amount of reflux. While Ayla’s reflux is far from severe and virtually insignificant, the doctor has prescribed some anti-reflux medication for us to try over the next month. He hopes that by addressing even the slightest discomfort brought on by food, Ayla may regain confidence in eating and thus rediscover her appetitite. He said it’s an unlikely long shot but something we should try anyway.

In the meantime, the doctor has also given us some gluten-free-dairy-free-anti-alergen baby formula to try. The formula tastes pretty bad apparently so he’s asked us to try Ayla on it first. If she accepts it he’ll write out a prescription for more (at $40 a tin!) so we’ll at least know she’s getting the calories she needs regardless of how much, or little, she actually eats.

RE: Constipation

We have been instructed to maintain the daily laxatives Ayla is taking, which remains at the same levels recommended for a six year old. The Doctor was concious of the trauma Ayla’s constipation could cause long-term if we stop, and he feels that the issue will resolve if Ayla’s diet improves ie; the small amounts of food Ayla actually eats at the moment are probably not providing her body with the full range of things it needs to create normal bowel motions. He also believes that we should address the growth issue as the number one concern and hopefully in identifying/rectifying that, the rest will be easier to treat.

So that’s it for now. We’re trying to get a plane ticket home as soon as possible so that we can return to normal life for at least a few weeks before heading back here again for our mid-October appointment and subsequent tests. I’ll keep you posted….

When I picked Ayla up from day care this afternoon, the Day Care Mum was in tears.

She was crying because she’d just seen Ayla in pain, crying, struggling to do something all other kids take for granted.

She’d just witnessed the reason for the ongoing food diary, the gluten free dairy free diet, the appointments, the tests, the band-aids on her elbows, and she was horrified.

As awful as I felt for her, I was glad that the day care centre finally got to witness what Hubby and I have been experiencing on the weeknights and weekends; our beautiful baby girl in crying pain.

After a bit of investigation I found out that what had caused the Day Care Mum to cry was simply a tiny, tiny part of Ayla at her worst.

What the Day Care Mum saw today did not include Ayla’s cheeks being stained from hours of tears. She didn’t see the vomiting, the eyes rolling back in Ayla’s head or the moments of unconsciousness, all brought on by pain.

But still, the Day Care Mum was crying because what she had seen was enough and she couldn’t stand it. She stared at me in awe and asked me how I do it and I simply couldn’t answer.

It made me look at Ayla’s situation a little differently because I didn’t realise that my strength might be diluting the severity of Ayla’s illness…. Because I am strong and logical, systematic and controlled, maybe I haven’t allowed myself to panic, which in turn drives outcry and action.

So of course, the guilt crept back in and the worry amplified and I found myself back at square one; questioning the doctors and their dismissive solutions for Ayla’s symptoms, but not the cause, and querying the dieticians and their long drawn-out processes of elimination.